Thursday, June 11, 2009

My Story for the Access for Affordable Healthcare forum

I was diagnosed with Rheumatoid Arthritis in 2005, just a month after my 38th birthday. I was one of the lucky ones. After about a year of repeated - yet sporadic- treatment for carpal tunnel, frozen shoulder and bursitis, my LPN listened to what I had to say at my yearly physical and sent me for bloodwork. My rheumatoid factor came back very elevated and I was off to the rheumatologist.

In the last four years, I have been through two rheumatologists (due to a cross country move, not dissatisfaction), a plethora of pharmaceutical cocktails and countless hours of pain. I am at a point now where I am currently taking Tramadol every day for pain and Folic Acid every day to combat the side effects (hair loss) of my other medications. Every Sunday I give myself an injection containing a cc of Methotrexate, which makes me so tired that Sunday's are generally a forgotten day. On Wednesday, I give myself an injection of Enbrel at lunchtime. This drug gives me a burst of energy for anywhere from 4-6 hours and then I crash- much like a steroid would work. That means that on Wednesday, I am in bed around 6:30 pm. When I was diagnosed and up until we found this combination, I would wake up every morning at 5am so that I could let my body have enough time to be functional by 8am when I had to go to work. It generally took three to four hours before I had full use of my body parts. Thanks to my current drug regimine I now have full use in about an hour.

Though this combination has done some very good things for me, it has in no way eradicated my pain. I still have constant pain in my feet, my hips, my back, my shoulders and my neck as well as roaming pain in my knees, elbows, wrists and fingers. I do not sleep through the night- which of course affects my productivity. Because of this, my rheumatologist has gave me Flexeril approximately 6 weeks ago to try and help me go to sleep at night. Thus far it has not made a difference. When I return tomorrow morning for my follow up visit and my routine bloodwork she will let me know if she has determined if we are dealing with Fibromyalgia as well as my already determined Chronic Fatigue Syndrome.

In many ways I am very fortunate. I have had the luxury of health insurance since before my diagnosis. My current out of pocket expenses are a $300.00 deductable each year, and then 20% of my bills for the rest of the year- that is a minimum of 10 visits to my Rheumatologist alone, bloodwork at each visit, and routine x-rays. I also pay just over $80.00 a month for my medications- medications that without my insurance would cost me $2687 a month. Last year I had physical therapy for a couple of months. I am still paying for that. My doctor currently wants me to have hydrotherapy. Though it would be very beneficial for me, I have opted to wait until my therapy bills from last year are paid first. I am fortunate that I have a supportive family and a high tolerance for pain. I am also fortunate that aside from my RA related issues, I am a fairly healthy person and don't need a lot of other medical care. I cannot imagine how we would pay for all of the care that I do require if we had no insurance.

That said- we need healthcare reform. Even with insurance we are barely getting breaking even each month. RA is an unpredictable disease. I could still be where I am right now in 5 years but I could also be in a wheelchair by then. We will never know. In the worst case, I would have no way to perform my job, a job that is already being affect at this point. Without my job- I have no insurance. It is a viscious cycle and it needs to be addressed. It is my hope that the current administration can take the necessary steps to insure that people like me are not left by the wayside and do not end up facing losing everything over this disease

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